My husband has now had 5 cycles of chemo Oxaliplatin/Capecitabine and 3 cycles of immunotherapy/ Keytruda.
He has tolerated the chemo well, but unfortunately developed a bad rash and colitis with the immunotherapy. The rash has responded well to the steroids, but the colitis has not improved on the steroids.
I would appreciate any advice on any treatment and diet that has worked for other people who have had this complication
We are waiting for an appointment with the oncology dietician ..slow response
Cheers
Pjae
Good Afternoon Pjae,
I hope you do not mind me replying as I have not had the same cancer as your husband but I hope that by doing so it may bump your post back to the top and hopefully someone who has been in the same circumstances will see it.
I have not had colitis but I did have severe diarrhoea and stomach effects following my treatments of chemotherapy and pelvic radiotherapy. There will be differences between the colitis caused by immunotherapy and the bowel damage caused by pelvic radiotherapy. I would advise you to go back to his team to ask about other treatments as he still has the diarrhoea.
You say that your husband has been prescribed steroids and that although they have helped with the rash they have not helped the colitis. It may be that there is a different type of steroid that would be suitable. Worth asking his doctor perhaps? I was given two different ones during my treatments.
The medication I was prescribed in the end worked for me. I don't know if they would be suitable for your husband but it gives an idea that there are potentially other treatments that may help get things under control.
I was prescribed loperamide, buscopan ,ondansetron and codeine phosphate.
I was also given advice on diet. It was very much trial and error and I did with the hospitals support. I also kept a food diary.
I think the best idea is to talk to his doctors about which dietary changes may help him with his colitis until he sees the dietician.
Hope this helps a bit.
Hopefully the appointment with the dietician will come through quickly.
Jane
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Dear Pjae
I would say colitis caused by immunotherapy is not usually treated the same as for other treatments such as chemotherapy and radiotherapy, so you have to be careful what advice you take. You need to contact your husband’s specialist nurse or oncology triage at your local hospital if he is still having diarrhoea. I hope he improves soon.
Lizzie
I hope that they can find something that will help.
The chemo upset tummy was manageable but the radiotherapy I had caused bowel damage/lots of inflammation and it was not great at the time. From what I understand colitis is a type of inflammation of the colon which is very similar to what I had although the cause was different. It is definitely worth speaking with his team about alternative steroid or different medication and diet- in my case it didn't completely stop it but it did improve drastically. They had to try different combinations to find something that worked.
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